Julian Boivin, Brain Stem Glioma

4 Years Old at Diagnosis

“Being on the receiving end of a doctor saying ‘no curative measures’ is unacceptable for a parent,” says Nettie Boivin. For this reason, within weeks of her 5-year old son Julian’s passing, Nettie decided she had to do something to stop children’s cancer.

Julian Boivin was a spunky, imaginative, handsome little fellow. “He stole a lot of hearts with those big brown eyes” recalled Nettie, 34, of Bloomfield Hills, Mich., a suburb just north of Detroit. Julian’s sweet and sociable nature made him easily-loved by many. Nettie recalls several instances when some of his wise-beyond-his-years comments actually made people stop and laugh in disbelief. Julian, Nettie and Brad Boivin’s first-born, was often described as “a joy.” It’s hard to imagine their distress when they were told their son had cancer.

On November 29, 2010, the Monday morning after Thanksgiving weekend, with no previous symptoms, 4-year-old Julian woke up disoriented and lethargic. His parents rushed him to the emergency room where a CT scan revealed a mass inside of his brain which was later diagnosed as a brain stem glioma, a form of brain cancer with an extremely poor prognosis. It averages a 90% mortality rate within 18 months of presentation. Brainstem Gliomas (BSGs) affect 200-300 children in the United States, mostly between the ages of 6 to 9 years, and are the leading cause of brain tumor death in children.

“We were paralyzed with fear. I could hardly breathe,” recalls Nettie. “We could not believe this was happening. Julian had always been so healthy, so happy…so normal.”

Over the next 7 months, Julian underwent four brain surgeries to alleviate symptoms, two minor surgeries, two rounds of radiation, and several months of experimental chemotherapy through St. Jude Children’s Research Hospital. But, despite his family and doctors’ best efforts, the disease – currently with no known cause or cure – proved too powerful. Julian’s family had to muster their last good-byes on July 3, 2011, just two weeks after celebrating his 5th birthday.

Nettie, Brad, and Julian’s 2.5-year-old sister, Mirabelle, along with thousands of friends, family and supporters, mourned the loss of this remarkable little boy. However, it was through The Team Julian Foundation, a 501(c)3 that Nettie and Brad’s best friends from Michigan State University started, that Nettie found a positive place to focus her energy as she continued Julian’s fight. Nettie and Brad were determined to raise awareness and badly needed funds for research so that no other family would have to endure the pain that they had just faced.

Three days before losing Julian, Nettie learned about the CureSearch Walk from his home care nurse. Nettie knew this was something she wanted to be a part of in September. Nettie picked up the phone in early August and immediately joined the Walk committee. She called on her connections from years of experience in the public relations industry to drum up interest from Detroit’s mainstream media. Her ideas were bountiful and proved a great addition to the CureSearch Walk – Southeast Michigan which raised more than $140,000 for children’s cancer research in its first year. Team Julian brought in $12,760 alone.

But, this is not where Nettie’s efforts stopped. “Julian had a big impact in his short time here on earth. We will forever be inspired by his courage and his smile,” says Nettie. “We want revenge on the disease that stole our son, and we are determined to arm other kids and their families with a fighting chance against this devastating diagnosis.”

At the same time that Nettie was helping with the CureSearch Walk, she began to plan for The Brave Knight: Courage for Cures, a cocktail benefit that would feature a silent auction and live music on Thanksgiving Weekend, the anniversary of Julian’s diagnosis. Nettie and Brad hoped to raise $20,000 and host about 200 attendees at their first event. But, thanks to hard work and a swell of community support, the inaugural event welcomed 275 guests and raised $40,000 in proceeds. They gave $33,000 to CureSearch for Children’s Cancer, which is now supporting a study on Diffuse Intrinsic Pontine Gliomas (DIPGs).

Through their efforts, Nettie and Brad are turning their pain and heartbreak into a force that has already raised $45,760 for CureSearch for Children’s Cancer since June 2011. CureSearch thanks them for their strength and determination to make a difference in children’s cancer.